Friday, January 20, 2023

Two Years of NED!

 Two years after the end of treatment, and Thomas continues to have No Evidence of neuroblastoma! Clean scans!

(We are still waiting for interpretation of his other organ scans.)

Today we met with the Survivorship Team for the first time. They focus on making the patient as healthy as possible while ameliorating late effects and doing extra monitoring for conditions the patient is now at higher risk for. It is also a top priority of the Survivorship Team to make sure that the patient understands what he went through medically in an age-appropriate way . . . every year as he gets older and older. We even met with a school liaison who will help us draft a 504 plan annually to document Thomas’s educational accommodations.

Thomas will continue to see the Solid Tumor Team once yearly till five years out. He will see the Survivorship team once yearly until his early 20s. That means that for the next three years, he will still visit someone at the Oncology Clinic twice yearly.

Once he is an adult, he will switch to a specialist Oncologist who treats adult survivors of childhood cancer. Since cancer did not even start to be cured until the 1950s, I consider it quite a blessing that we now have specialists who treat adult survivors of childhood cancer!

(The photos are of Thomas reading a book while waiting at Clinic. He usually has a book in his hands!)

Monday, January 16, 2023

Learning Independence with Medications

I am so proud of Thomas who has recently had to accept numerous changes of how and when he is given what medications. We doctors and parents understand that Tom’s anatomy and problems are unique, so we have to experiment with what meds routine works. But a little boy who is only seven can get really confused by his mama changing what was “the really important way to take your meds!” to some OTHER “really important way.” 

Right now, Thomas has to take one med and then wait five long minutes before taking another medication (in applesauce that feels very yucky in his mouth). The second medication dose even has to be calculated based on the macro grams of his anticipated meal! Once he has had the second med, then he may eat. He has to eat everything within 15 minutes or take another dose of that second med. He often saves food throughout the day to consolidate and eat it all at once with his meds: how many of us adults excercise that prudence and delayed gratification?

While Thomas needs oversight right now, I am trying to encourage independence from the start. My boy gets out his own timer to wait the five minutes and he is daily getting better about anticipating eating ahead of time (e.g., using those five minutes to gather or heat his food, set the table, say grace, and so forth). He adapts and overcomes so often! I could cry.

Happy Tenth Birthday, Joseph!

Happy tenth birthday to Joseph! He is a boy full of energy, joy, and sensitivity! Maybe sitting still and being quiet aren’t his strengths, but he will rush into heroic action whenever needed, such as racing to unplug the cord that was electrocuting our dog Tilly while the rest of the witnesses froze in shock. We can’t wait to see what double digits are like for Joseph.

Sunday, January 15, 2023

Scans Week Upcoming!

This is the week of Thomas's 24-month cancer scans . . . which is probably all I need to type for my Cancer Parent friends. 'Nuff said.

Prayers are appreciated!

Scan weeks are tough for parents. Thankfully, Thomas is young enough and has no fear of relapse that he's pretty content to go on some outings and spend one-on-one time with his parents. He might get a restaurant outing from Mama, and the hospital might give him a gift or two, which he always likes.

We have an "urgent" appointment scheduled with GI while we are there: if you're a patient who qualifies for having a GI doc, normal appointments wait 4 months or more, an urgent appointment in our case is about two weeks out, and if there's an emergency, that's what Emergency Rooms are for. Thomas was so unstable recently, I had to ask his doc for guidance on what would qualify as symptoms enough to take him to the ER. We have spent a couple of months carefully coordinating—*so* *many* *phone calls and emails*—some other procedures while Thomas is under general anesthesia: his surgeon will change Thomas's button (for my tubie parent friends: it's a special kind of button) and Radiology will do an MRI to examine what is going awry with Thomas's liver and/or pancreas and/or GI tract. This follows on numerous labs last week. 

It will be three full days of outpatient appointments at the hospital and a lot of my cheerfully helping Thomas pass the time. I live in the bizarre universe of Medical Parents: part of me feels comfortable and normal living the hospital life now, while the other part of me will interject and ask how on earth these serious concerns have become our normal life?

I've been through enough of these weeks to have learned a thing or two about my own nature. "Scanxiety" is really tough. This time around, I'm actually more concerned about the GI struggles Thomas has newly been having these last five months. I've been quiet about them on social media, but he has lost weight and his quality of life involves renewed suffering these days. 

In the last couple of weeks, I've been in full-on Mama Bear Mode: researching, reading, creating charts of Thomas's data, writing repeated letters and texts and making calls to doctors, and even calling corporations about medications. I was willing to look like an annoying fool to get him the medical attention he needed. We are back to Thomas having to take meds and supplements on a strict schedule all day long, which also adds to complexity when we go out of the house. I thought those days were over, but they're back.

I want answers from the MRI, but I am anxious about more bad news.

I've learned that on weeks like this, I need to clear the decks. I teach almost no homeschool at all. I plan the simplest dinners. I plan and purchase Thomas's favorite and most sustaining snacks and lunches for all our time hanging around the hospital. And rather than fight the insomnia I'm bound to have, I've come to accept it as an old, familiar acquaintance. Going into a week like this, I plan what books I might read or shows I might watch in the middle of the night when the hours need to be passed. Knowing about the fatigue, I try not to allow myself to have important conversations or make important decisions. Even if Chris can’t stay all day, he drives Thomas and me to and from the hospital on scan day.

If you can spare a prayer this week, I'd appreciate it. Thursday will be the longest day at the hospital.

Thursday, January 12, 2023

David Learns to Ride a Bike!

David (5), who I call my feral child (because I give him not-enough time or attention) taught himself how to ride a bike. 

We don’t use training wheels in this house, so all the kids have just glided around until they start riding for real one day. 

Click here:

Bonus picture: "Concentration"

Tuesday, January 10, 2023

Starting Dual Enrollment

What a feeling when one’s firstborn is heading out at 7:15 a.m. to his first college course as a dual enrollment student—and driving himself!

Wednesday, January 4, 2023

Feeling Included

Our barber shop keeps a stash of sugar-free lollipops for Thomas specifically after discovering that he couldn’t have the candy they offer to customers. This is the smile of a boy who feels included!